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Manchester report reveals that many people with ME/CFS don’t trust their GPs

Healthwatch Trafford have released the findings of a major survey of people with ME/CFS to find out what their experiences of the NHS were like.

The report Tired of explaining : Experiences of services for ME/CFS patients in Trafford and Greater Manchester highlights the issues that people with the condition are finding and how that impacts upon them.

KEY FINDINGS INCLUDE
• More than a third of people in the UK diagnosed with ME/CFS get no information from the NHS (and 40% that did receive some information said it wasn’t useful)

• Less than 10% of respondents in Greater Manchester felt inpatient hospital facilities were suitable for them

• More than half in Greater Manchester said they wouldn’t trust their GP to provide them with information about the condition

• 37.5% of people across the UK waited more than two years for a diagnosis, with a quarter in Greater Manchester waiting more than five years

• 91.9% of respondents in Greater Manchester are unable to work or study because of their condition

• 77% have had ME/CFS for five years or more, with 34.7% having had it for 1over 15 years,
http://www.meassociation.org.uk/201...ps-healthwatch-trafford-survey-17-march-2017/
 

sarah darwins

Senior Member
Messages
2,508
Location
Cornwall, UK
Marvellous. This is what biopsychosocial domination of the field has achieved — total confusion and distrust.

This survey alone should convince NICE that the current situation is a disaster, and that psychologists and psychiatrists should not be let anywhere near chronically ill people except at the patient's request and in the appropriate role of support, not 'treatment'.
 

charles shepherd

Senior Member
Messages
2,239
MEA INPUT INTO (UK) MEDICAL EDUCATION ON ME/CFS:

Just a reminder that we still have funds available in our Medical Education Department to send out copies of the 132 page MEA purple book (ME/CFS/PVFS - An Exploration of the Key Clinical Issues) to any GP or hospital doctor who would benefit from having up to date information on:

1 All aspects of Research into ME/CFS,
2 Clinical Asseessment and Diagnosis of ME/CFS,
3 All aspects of Management of ME/CFS

The MEA purple book also has a very comprehensive Reference section containing over 500 of the most important research papers and clinical trial reports

As the MEA takes a very critical position on NICE, CBT, and GET, this is reflected in our purple book information and guidance to doctors

The book is sent out with a covering explanatory letter from myself

If you want a copy sending to your GP or hospital specialist, please send the name of the doctor and the surgery or hospital address to Gill or Helen at the MEA office

MEA purple book: http://www.meassociation.org.uk/201...ch-masterwork-is-published-today-1-june-2016/

We also met with Professor Ian Curran from the GMC at the House of Lords back in February to discuss medical education at both an undergraduate and postgraduate level

We are now hoping to have a similar discussion with Professor Jenny Higham from the Medical Schools Council - the organisation that is responsible for the content of the undergraduate medical curriculum

Minutes for the House of Lords meeting with the GMC representative:

http://www.meassociation.org.uk/201...nutes-of-the-meeting-held-on-7-february-2017/

Dr Charles Shepherd
Hon Medical Adviser, MEA
 

user9876

Senior Member
Messages
4,556
It always worries me when reports like this identify a clear problem and suggest:
GPs need better training on the condition: - what it is, how to identify it, how to treat it.
They need to be made aware of the specialists and services that are available and when to refer to them. T

Given the state of specialist services and the people who would end up training GPs I wonder if it is better to have them in an ignorant state rather than in one where they are pushing harmful treatments and claiming they can cure people with GET.

Whilst GPs are a big issue the real issue is those at the top who give mis-information and are allowed to get away with spinning trial results to patients and doctors - basically lying to them. We need to stop this before any other services will improve.
 

Never Give Up

Collecting improvements, until there's a cure.
Messages
971
MEA INPUT INTO (UK) MEDICAL EDUCATION ON ME/CFS:

Just a reminder that we still have funds available in our Medical Education Department to send out copies of the 132 page MEA purple book (ME/CFS/PVFS - An Exploration of the Key Clinical Issues) to any GP or hospital doctor who would benefit from having up to date information on:

1 All aspects of Research into ME/CFS,
2 Clinical Asseessment and Diagnosis of ME/CFS,
3 All aspects of Management of ME/CFS

The MEA purple book also has a very comprehensive Reference section containing over 500 of the most important research papers and clinical trial reports

As the MEA takes a very critical position on NICE, CBT, and GET, this is reflected in our purple book information and guidance to doctors

The book is sent out with a covering explanatory letter from myself

If you want a copy sending to your GP or hospital specialist, please send the name of the doctor and the surgery or hospital address to Gill or Helen at the MEA office

MEA purple book: http://www.meassociation.org.uk/201...ch-masterwork-is-published-today-1-june-2016/

We also met with Professor Ian Curran from the GMC at the House of Lords back in February to discuss medical education at both an undergraduate and postgraduate level

We are now hoping to have a similar discussion with Professor Jenny Higham from the Medical Schools Council - the organisation that is responsible for the content of the undergraduate medical curriculum

Minutes for the House of Lords meeting with the GMC representative:

http://www.meassociation.org.uk/201...nutes-of-the-meeting-held-on-7-february-2017/

Dr Charles Shepherd
Hon Medical Adviser, MEA
What kind of response have you gotten from this?
 
Messages
13,774
Given the state of specialist services and the people who would end up training GPs I wonder if it is better to have them in an ignorant state rather than in one where they are pushing harmful treatments and claiming they can cure people with GET.

Whilst GPs are a big issue the real issue is those at the top who give mis-information and are allowed to get away with spinning trial results to patients and doctors - basically lying to them. We need to stop this before any other services will improve.

Treatment of ME/CFS is terrible so we need to give more money to those responsibile for this.
 

A.B.

Senior Member
Messages
3,780
I remember reading some Wessely presentation where he claimed the BPS approach to this illness would lead to peace and harmony (or something to that extent).
 
Messages
66
I applaud Healthcare Trafford for recognising that such a survey was needed and that better care and understanding is required. The questions are relevant and the findings will surprise no-one who lives with this illness.

And I agree with the points made by @sarah darwins and @user9876. Until the corrupted BPS model and its protagonists hypothesis and spin on this illness is completely refuted, any initiatives to raise understanding are at risk of being undermined.

Unfortunately I live in an area that comes under the King's College Trust so I have first hand experience of how the BPS model and its false illness beliefs have compromised my health care.

Luckily I have an extremely supportive GP, who is also a member of my local CCG, who has been willing to listen to, observe, respect and consider my lived experience and the increasing bio-medical research being carried out and give as much support as possible within current guidelines. Without them I think I would have given up some time ago since I live alone, and the disbelief and contempt this illness brings on top of its debilitating signs and symptoms is both shocking and often soul destroying.

However, my innate resourcefulness, good humour and sense of injustice and the ridiculous has helped me stand my corner, take care of myself and make the best of a bad situation. And that's why I'm so hopeful and grateful for everything that is being done to make a difference.
 

SilverbladeTE

Senior Member
Messages
3,043
Location
Somewhere near Glasgow, Scotland
Most sharks are completely harmless to Humans, in fact, they help keep the oceans and thus indirectly, healthy.

But I wouldn't like to be swimming bare naked with my nutsack within chewable reach of a shark...much same thing when considering what some docs have done :p
 

keenly

Senior Member
Messages
814
Location
UK
I remember reading some Wessely presentation where he claimed the BPS approach to this illness would lead to peace and harmony (or something to that extent).

IS PROFESSOR SIMON WESSELY GUILTY OF MISLEADING
MEDICAL PROFESSIONALS AND OTHERS?

A Call for a Parliamentary Select-Committee
of Inquiry into UK ME/CFS Policy

http://www.me-ireland.com/wessely.pdf

Why is this cretin still around? He is the Tony Blair of the ME world.
 

keenly

Senior Member
Messages
814
Location
UK
Marvellous. This is what biopsychosocial domination of the field has achieved — total confusion and distrust.

This survey alone should convince NICE that the current situation is a disaster, and that psychologists and psychiatrists should not be let anywhere near chronically ill people except at the patient's request and in the appropriate role of support, not 'treatment'.

Psychiatry is a huge business. We must understand everything is corrupt.
 

Dolphin

Senior Member
Messages
17,567
Please repost the following

http://healthwatchtrafford.co.uk/about-us/our-reports/

Response below from main contributor and local ME patient.

"I am extremely grateful for Healthwatch Trafford agreeing to do a survey, and for it to include whole of England (now UK). I am also grateful for the ongoing support from organisations such as The Patient's Association, Thyroid UK, 25% ME Group, Dr Speight (Tymes Trust), Invest in ME Research and the ME Association.

I was very impressed to see Healthwatch Trafford recently set up a similar survey for Fibromyalgia, which is a condition that often overlaps ME (more controversially called CFS).

There have of course been some problems with the ME (CFS) survey: the time delay of two years, the use of two psychologists for a Neurological condition, and the fact that it may be used for academic research by these psychologists; the title 'Tired of Explaining' ME is not tiredness, but debilitating fatigue with other symptoms e.g. PEM, frequent prolonged infections (Canadian Consensus); only forwarding information upon request to other local HW and CCGs.

However, from the start both myself and Healthwatch have been surrounded by an overwhelming amount of problems and politics which I did not expect. This has taken over my life for the past two years, having an impact on my own health and support.

This includes people trying to speak on behalf of others, the under representation of severe patients and children, selected 'reps' (also who I feel may not fit the criteria of ME or typical demographic e.g. gender and age), secret meetings, lack of information and transparency, copycatting and general disrespect for the individual rights of patients under the NHS Constitution.

It has also highlighted general problems with the post-Francis Report system for all patients (not just those with ME). These include the process of giving feedback and it being taken seriously; The regulation and accountability of the NHS at every level; Complaints being ignored and/or denied; Being able to speak up politely with evidence, without the risk of being viewed and treated negatively and feeling 'blacklisted'; Local Government; and the regulation of the third sector, amongst other problems.

I have sent my concerns and evidence to the media and government in the hope that this will one day change as patient's lives continue to be at risk, including children. Lessons have not been fully learnt from Mid-Staffordshire and subsequent events.

That said, I believe that patients with ME (and other conditions) should keep giving polite feedback and evidence direct to watchdogs and similar organisations if we want positive change to happen. We are a very large group of people with a valuable voice. Thank you to everyone who participated."

Karen Morris
ME CFS Manchester
www.memanchester.wordpress.com
www.facebook.com/groups/memanchester
 

Aurator

Senior Member
Messages
625
I live in Trafford, and have paid visits to hospitals both there and in Manchester. The hospitals I visited were as well equipped to deal with ME as medieval leech doctors were to deal with bubonic plague.

My GP practice is in Manchester. I'm pretty sure they don't believe ME/CFS is a physical illness there, so I rarely go if I can help it. Things would no doubt be different if BPS propaganda hadn't had such an insidious effect on people's attitudes to ME over the years - on medical staff first and foremost. In every clinic I attend I can't seriously be mistaken for anything other than entirely rational, and yet it's fairly evident that this is still not enough to overcome the entrenched belief in some medical staff that ME patients are primarily psych cases.
 

Tom Kindlon

Senior Member
Messages
1,734
Valerie Eliot Smith



I did some research a while back trying to find records of any actions taken against health authorities re. recommended treatments causing harm. I couldn't find any - but that doesn't necessarily mean there haven't been some. They might have happened but were settled or abandoned or didn't reach the courts of record (ie, the higher courts). In my last blog post I wrote this: "[F]rom a legal perspective in the UK, the NICE guidance remains one of the biggest obstacles. As things stand, the guidance provides a substantial defence against any legal action which might be initiated by ME patients who have been harmed by undertaking treatments recommended in the guidance, such as Graded Exercise Therapy or Cognitive Behavioural Therapy. An attempt in 2009 at securing a judicial review of the guidance failed disastrously." https://valerieeliotsmith.com/2017/...ect-towards-a-bigger-picture-revised-version/ I talked about some of the human rights issues in another post https://valerieeliotsmith.com/2016/03/07/karina-hansen-3-update-march-2016/ Human rights matters are usually considered as part of other ongoing legal proceedings. The Trafford Report sets out some of the avenues of complaint which could be used more by ME patients to register complaints about their treatment. Initially, these are not legal proceedings but could be a good route to follow. Providing Information and assistance about how to complain is what the various ME charities should have been doing but I've seen little evidence of it.

https://www.facebook.com/tom.kindlo...=1347944431966746&comment_tracking={"tn":"R"}